Implications of social capital for the inclusion of people with disabilities and families in community life

This paper seeks to ascertain the usefulness of the theory of social capital as a framework for developing and sustaining the inclusion of people with disabilities and families in community life. We discuss the theoretical elements of social capital and assess its relevance when understanding both the experiences of people with disabilities and their families and the possible implications for policy and programme efforts to promote inclusion. Preliminary findings from two studies of the experiences and social networks of people with disabilities and their families in communities in regional and rural Australia are presented. It is argued that to date, people with disabilities and their families have largely been excluded from the broader social capital debate and that social capital thinking has had minimal influence on efforts to achieve the inclusion of people with disabilities into community life. It is further argued that new paradigms of support are needed that build capacity and social capital through working alongside individuals and families to influence not only outcomes for them, but also for the communities on which they live. The local area coordination model as it has developed in Australia since 1989 provides some instructive signposts for integrating individual, family and community approaches. It is concluded that social capital theory can make a contribution to inclusion theory and practice but we should use it with circumspection.

Language, respect and the power of protest: Linguistic stereotyping and people with disabilities in Japan

Discriminatory language became an important social issue in the west in the late twentieth century, when debates on political correctness and minority rights focused largely on the issue of respect in language. Japan is often criticized for having made only token attempts to address this issue. This paper investigates how one marginalized group—people with disabilities—has dealt with discriminatory and disrespectful language. The debate has been played out in four public spaces: the media, the law, literature, and the Internet. The paper discusses the kind of language, which has generated protest, the empowering strategies of direct action employed to combat its use, and the response of the media, the bureaucracy, and the literati. Government policy has not kept pace with social change in this area; where it exists at all, it is often contradictory and far from clear. I argue that while the laws were rewritten primarily as a result of external international trends, disability support groups achieved domestic media compliance by exploiting the keen desire of media organizations to avoid public embarrassment. In the absence of language policy formulated at the government level, the media effectively instituted a policy of self-censorship through strict guidelines on language use, thereby becoming its own best watchdog. Disability support groups have recently enlisted the Internet as an agent of further empowerment in the ongoing discussion of the issue.

Addressing internet training issues for people with Parkinson's disease

The Internet enables access to information, services, support and participation in leisure opportunities. Some populations, including people with disabilities, lack access to these opportunities through the Internet. Barriers may include finances, physical access, lack of resources and inaccessible websites. Limited access to Internet training is an additional barrier for people with communication impairments. People with Parkinson's disease (PD) may have difficulty accessing usual Internet training due to high-level language, cognitive and physical limitations. Aphasia-friendly Internet training materials were trialed with this population to investigate if participants could learn to use the Internet and would benefit from Internet training. The tutors' experience was also investigated using qualitative measures. Seven people with PD were matched with volunteer tutors. These pairs met for six Internet training lessons using training materials available as a free download from: http://dexter.shrs.uq.edu.au/cdaru/aphasiagroups/. Pre and post-test Internet skills assessments and attitudinal questionnaires were conducted. Significant differences between pre and post-test scores were found. Participants reached varying levels of independence on Internet tasks. Favorable outcomes were reported by participants, and tutors reported a positive experience. Further investigation is recommended to determine the efficacy of this approach compared with other training avenues and with other communication-impaired populations. Practical and theoretical implications for speech pathology practice are discussed.

Personalised social care for adults with disabilities: A problematic concept for frontline practice

This paper explores the complexities and contradictions of frontline practice that pose problems for personalised social care through enhanced choice. It draws on semi-structured interviews with community care workers, social workers, occupational therapists and care managers in a social service department. Practitioners interviewed were asked about their current assessment and documentation system, including the assessment documents currently used; how they approached information gathering and the topics they explored with service users; and their experience of documenting assessment and care management. The paper argues that the validity and sustainability of personalised social care in frontline practice relies on developing a thorough understanding of the complex and implicit assessment processes operating at the service user/practitioner interface and the inevitable tensions that arise for practitioners associated with the organisational context and broader service environment. The findings demonstrate the variability among practitioners in how they collect information and more importantly, the critical role practitioners occupy in determining the kinds of topics to be explored during the assessment process. In so doing, it shows how practitioners can exert control over the decision-making process. More importantly, it provides some insight into how such processes are shaped by the constraints of the organisational context and broader service environment. Complexities and contradictions may be an inherent part of frontline practice. The issues discussed in this paper, however, highlight potential areas that might be targeted in conjunction with implementing personalised social care through enhanced choice for people with disabilities.

Meeting in the middle: Improving communication in primary health care consultations with people with an intellectual disability

The increased presence and participation in Australian society of people with an intellectual disability provides challenges for the provision of primary health care. General practitioners (GPs) identify themselves as ill equipped to provide for this heterogeneous population. A major obstacle to the provision of appropriate health care is seen as inadequate communication between the GP and the person with an intellectual disability, who may or may not be accompanied by a carer or advocate. This qualitative study in which five GPs, three people with intellectual disability, seven carers and two advocates (parent and friend) were interviewed was conducted in Brisbane, Australia. The aim was to better understand the factors that have an impact upon the success of communication in a medical consultation. Findings suggested that GPs were concerned with the aspects of communication difficulties which influenced their ability to adequately diagnose, manage and inform patients. Implications for practice management were also identified. People with intellectual disability reported frustration when they felt that they could not communicate adequately with the GP and annoyance when they were not included in the communication exchange. Carers were strong advocates for the person with intellectual disability, but indicated insufficient skill and knowledge to provide the level of assistance required in the consultation. The outcome was a model of cooperation that outlined the responsibilities of all players in the medical encounter, prior to, during and after the event.

Validity of accelerometry for measurement of activity in people with brain injury

Purpose: To evaluate the validity of a uniaxial accelerometer (MTI Actigraph) for measuring physical activity in people with acquired brain injury (ABI) using portable indirect calorimetry (Cosmed K4b(2)) as a criterion measure. Methods: Fourteen people with ABI and related gait pattern impairment (age 32 +/- 8 yr) wore an MTI Actigraph that measured activity (counts(.)min-(1)) and a Cosmed K4b(2) that measured oxygen consumption (mL(.)kg(-1.)min(-1)) during four activities: quiet sitting (QS) and comfortable paced (CP), brisk paced (BP), and fast paced (FP) walking. MET levels were predicted from Actigraph counts using a published equation and compared with Cosmed measures. Predicted METs for each of the 56 activity bouts (14 participants X 4 bouts) were classified (light, moderate, vigorous, or very vigorous intensity) and compared with Cosmed-based classifications. Results: Repeated-measures ANOVA indicated that walking condition intensities were significantly different (P < 0.05) and the Actigraph detected the differences. Overall correlation between measured and predicted METs was positive, moderate, and significant (r = 0.74). Mean predicted METs were not significantly different from measured for CP and BP, but for FP walking, predicted METs were significantly less than measured (P < 0.05). The Actigraph correctly classified intensity for 76.8% of all activity bouts and 91.5% of light- and moderate-intensity bouts. Conclusions: Actigraph counts provide a valid index of activity across the intensities investigated in this study. For light to moderate activity, Actigraph-based estimates of METs are acceptable for group-level analysis and are a valid means of classifying activity intensity. The Actigraph significantly underestimated higher intensity activity, although, in practice, this limitation will have minimal impact on activity measurement of most community-dwelling people with ABI.

Measuring outcomes of a communication program for older people with hearing impairment using the International Outcome Inventory

The main objective of this study was to describe the outcomes of a communication education program for older people with hearing impairment using the International Outcome Inventory - Alternative Interventions (IOI-AI) and the version for significant others (IOI-AI-SO). Ninety-six people aged 58 to 94 years participated in an interactive group education program for two hours per week for five weeks. The IOI-AI was administered at one to two weeks after the last educational session and 29 significant others also completed the IOI-Al-SO at this time. Overall, positive results were obtained using both questionnaires, and satisfaction with the program was particularly high. Findings also compared favourably to reports of outcomes for other audiological interventions (i.e., another communication training program and hearing aid fitting). Principal components analysis of the IOI-AI revealed a somewhat different factor structure than the original IOI-HA. The two versions of the 101 applied in this study are recommended as simple and effective measures of the outcomes of alternative interventions.

Supportive care needs of people with brain tumours and their carers

Goals of work: The diagnosis and treatment of a brain tumour may result in long-term changes in a patient's functional and social abilities and/or in a greatly reduced life span. A qualitative investigation was conducted to examine the supportive care needs of patients with brain tumour and their carers. Materials and methods: Overall, 18 patients and 18 carers participated in focus groups or telephone interviews, following a structured interview guide to elicit supportive care services of importance to these patients and carers. Main results: Six major themes were identified using the framework analysis method, including needs for information and coping with uncertainty, practical support, support to return to pretreatment responsibilities or prepare for long-term care, support to deal with social isolation and organize respite care, support to overcome stigma/discrimination and support to discuss potentially reduced life expectancy. Conclusions: Five recommendations to improve service delivery include: assignment of a dedicated member of the care team or case manager; proactive dissemination of information, education and psychosocial support; access to objective assessment of neuropsychological functioning; facilitating easier access to welfare payments; and services facilitating communication about difficult illness-related topics. Provision of services along these recommendations could improve supportive care of brain tumour patients and their carers.